It takes a generous heart and a certain amount of faith to donate a vital organ to someone with whom you don’t share the bonds of blood, marriage or friendship.
Remarkably, when a Vancouver man flew to Toronto in September, 2009 to donate a kidney to a complete stranger, he helped save the life of not just one person, but five, as part of Canada’s new national kidney swap program.
And yet this same man was forced to wage an exhausting two-year battle to get medical treatment for himself. Officials with British Columbia’s Health Ministry refused to fund surgery to fix his abdomen, left lopsided as a result of a pinched nerve during the kidney transplant.
Only after The Globe and Mail published an editorial about his plight last month did B.C. health officials finally capitulate; he expects to have follow-up surgery early next year. The case underscores the challenges of running a national kidney exchange program in a country with provincial health-care delivery, and the need to ensure that both donors and recipients receive the medical care they require.
“It has been distressing to have to beg for treatment when I have medical complications resulting from a kidney donation,” said the man, who has asked not to be identified to preserve the program’s anonymity. “I hope in the future kidney donors won’t be left behind.”
Health officials rejected his request for the $10,000 abdominal operation, noting in a May, 2011 letter that “this is in no way meant to diminish the very generous donation he gave to save a life.” The Toronto hospital where he donated his kidney also declined to assist, because he wasn’t an Ontario resident.
A spokesperson for the B.C. Health Ministry explained Tuesday that while cosmetic surgery is not normally covered, given the unique nature of this case, it has decided to make an exception. “We have contacted the patient directly to advise that we are moving forward,” Michelle Stewart said. “As with any type of surgery, there are risks associated with transplant, both for the donor and the recipient.”
Despite the man’s bureaucratic battle, he says he has no regrets, explaining he was inspired to donate after encountering a co-worker who donated a kidney to her son, and a friend whose father needed a new kidney. He stepped forward, and when he wasn’t a match, decided to donate to a stranger.
“I decided I really wanted to give a gift to someone else and I liked the idea of being an anonymous donor,” he said. “Many people don’t understand what the gift of giving truly means. I found it baffling that some family members refuse to consider donating to their own relatives.”
Employed in the health-care sector, he has also been exposed to patients facing end-of-life issues. “If you can help someone extend their life and it won’t affect your health, then why not?”
In Canada, 35,000 people suffer from kidney disease; 82 people died last year while waiting for a kidney to become available.
The man was one of the first to participate in the Living Donor Paired Exchange Program, launched by Canadian Blood Services (CBS) two years ago to address Canada’s chronic shortage of kidneys. It allows kidney patients with donors who are medically incompatible to sign up in a national kidney registry and widen the pool of potential matches.
As someone with blood type B, the man was a match for a patient who had an incompatible donor. That person’s donor then gave to another patient in the national registry, freeing up that person’s incompatible donor to give to yet another patient in the registry. Altogether, this domino effect resulted in five people receiving new kidneys.
There have been 91 transplants since 2009, and 19 have involved altruistic donors without intended recipients. These unsung heroes are key to the program’s success, and help save the medical system hundreds of thousands of dollars. A kidney patient requiring dialysis costs the system about $50,000 a year.
Ron Vezina, a CBS spokesperson, notes an advisory committee of transplant experts and ethicists was recently struck and will address the complex issues the man’s case exposes, and the need to co-ordinate care of donors and recipients across provincial boundaries.
The man says he understood the risks of surgery, and instructed his family not to take action against the hospital should something go wrong. “But I believed if there was a mishap, there would be efforts to repair it,” he said.
Following surgery, his incision was sore and swollen – symptoms doctors said would eventually dissipate. The pain did, but the bulge on the left side of his abdomen did not. A radiology report from July, 2011 describes “atrophy of the abdominal wall musculature.”
In order for donors to have confidence in the program, they must be reassured that their medical costs will be covered – no matter where they live, the man says.
“The last thing I want is for people not to donate,” he said. “At the same kind, there seems to be a gap in providing services to people who need them due to their own act of kindness.”